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Immortal Cells, Enduring Issues
June 2, 2010  |  by Dale Keiger

(page 3 of 5)

The second thing that makes informed consent complicated is the “informed” part. Scientists making a conscientious effort to secure informed consent must wrestle with translating complex issues for a lay audience. A section of The Immortal Life of Henrietta Lacks describes Hopkins researchers, including renowned geneticist Victor McKusick, Med ’46, taking blood samples from members of the Lacks family in 1976. McKusick and his assistant at the time, Susan Hsu, were searching for DNA markers that could identify HeLa cells in any lab sample. They could not recall for Skloot how well they had informed Deborah Lacks about why they wanted some of her blood. But years later Lacks told Skloot that she believed she had submitted to a test for cancer. Hsu recalled for Skloot giving David Lacks, Henrietta’s husband, a technical explanation of why she wanted to draw blood, using terms like “HLA androgen [sic],” “genetic marker profile,” and “genotype.” David had a fourth-grade education. Did Hsu inform him, or baffle him? Says Skloot, “People get this stuff if you can explain it to them clearly. There is a science literacy problem, but there’s a bigger problem with a lack of communication from the scientists. If you go to a hospital and you don’t speak English, you’re going to get a translator—French, Spanish, whatever. If you walk in and you don’t speak science, they’re not going to call in the science translator who says, ‘Let me help explain this to you.’”

Finally, current consent regulations cover only studies done by researchers who have firsthand contact with tissue donors. If you are a scientist working with anonymized tissue samples taken from a repository, that is not considered research on a human subject and no informed consent is required.

Ruth Faden, director of the Berman Institute, raises one more ethical issue: when to ask for informed consent. Is it proper, when patients are about to undergo surgery and have to deal with consent for the operations, to present them with another set of decisions regarding what might be done with their tissues? Faden recently had surgery to repair her shoulder’s rotator cuff; she notes that like anyone, she has a finite amount of emotional energy, and in this case wanted to apply it to thinking clearly about her impending procedure, not what might be done with some of “the gunk,” as she puts it, that was cleaned out of her shoulder. Says Scott, “How much are people going to be paying attention? They’re under stress from their condition, then you’ve got this other thing that you shove underneath their noses.”

IN THE JANUARY 30, 1976, issue of Science, McKusick co-authored a paper, “Genetic Characteristics of the HeLa Cell.” That paper published the analysis of the blood drawn from Deborah Lacks and others in her family and listed 43 genetic markers found in the Lackses’ DNA. The paper identified Henrietta and listed family members as “Husband,” “Child 1,” and “Child 2.” Your DNA reveals who you are in the most fundamental sense—your genetic abnormalities if you have any, your predisposition to certain diseases such as breast cancer, whether your parents are really your parents or your sister is really your sister. Today no ethical researcher would publish the sort of genetic information complete with identifiers that McKusick published in 1976.

The Immortal Life of Henrietta Lacks reports other examples of violations of the Lackses’ privacy. For example, someone, presumably at Hopkins, gave Henrietta’s medical records to journalist Michael Gold, who quoted from them in his 1985 book A Conspiracy of Cells: One Woman’s Immortal Legacy and the Medical Scandal It Caused. According to Skloot, no one in the Lacks family had ever seen those records or given permission for their release. Gold included a stomach-churning description of Henrietta’s autopsy. He later told Skloot that he recalled unsuccessful attempts to contact the family; she quotes him as telling her, “And to be honest, the family wasn’t really my focus.  . . . I just thought they might make some interesting color for the scientific story.”

The privacy of medical information remains an ever-growing concern as biomedical research, both academic and commercial, has burgeoned. In 1999, RAND Corporation estimated, in a monograph titled Handbook of Human Tissue Sources, that 307.1 million human tissue samples were stored in various repositories throughout the United States. No doubt that number is significantly larger today. The term “biobank” has entered the lexicon. A biobank is a collection of human tissue, like a living database of human cells. National biobanks now exist in Estonia, Canada, Japan, Latvia, Singapore, Sweden, Iceland, and the United Kingdom. Biobanks have been created by disease advocacy groups, commercial research companies, and academic centers such as Howard University, which founded the National Human Genome Center to foster genomic research on African Americans and African diaspora populations. “Recently, there’s a biobank on every corner,” says Scott. “That may be a slight exaggeration, but not by much.”


47 Comments


  1. Thanks for this thought-provoking piece. And bravo to you and to Hopkins for taking on something that is/could be so thorny for the institution.

  2. This is a fascinating tale, both heartlifting in the good done to mnedical science and shaming in its account of the treatment of the family of Henrietta Lack. I should have liked to learn one thing though: in what way are Johns hopkins university now supporting Henrietta Lack’s family?

    • They aren’t. That is why this has turned into such a debate of ethics. The majority of the public feels that each person should be compensated for their contribution to the medical field, especially if their cells, tissues, information, etc. have made the industry millions or even billions of dollars. Still, uninformed “donors” receive no pay. That is because many “donors” do not know (were not informed by their doctors) that their bodies are being utilized by science. Case and point, Henrietta Lacks. This is the essentially the debate: What is the greater good? Paying the public for their contributions to the advancement of medicine and science, or continuing to take samples from patients without asking as to not risk a patient saying “no,” thus preventing such medical advances to occur.

  3. I just finished “The Immortal Life of Henrietta Lacks” and was fascinated by the entire story. Her cells have helped medical science “push the envelope” and discover so many cures. How one woman’s contribution of cells over 60 years ago (be it non-voluntary) still exists today is mind boggling. However, it is disheartening to know that although Henrietta’s contribution to science has been paramount, her family still is unable to pay for medical attention. I hope that John Hopkins will “step up to the plate” and do the right thing by them. Thank you Rebecca for writing such a wonderful book!

    • Her family is getting the education and dental work, as well as their truck fixed due to the funds from the Henrietta Lacks Foundation set up by Rebecca Skloot’s royalities from her book.

      • Sue, the education, dental work and a fixed truck is NO comparison/adequate means of compensation for their family’s contribution to the medical community and patients around the globe. At the VERY LEAST, JHU can provide her children with comprehensive medical benefits for the duration of their lives…? Just a thought…

  4. This article nicely describes and discusses issues related to access of personal information from medical records, use of tissue samples, informed consent, etc. These are issues that are raised, debated, and are of cocnern to many hospital administrators and IRB/EC.

  5. Johns Hopkins should consider providing free health care to Henrietta’s descendents as a way of appreciateion of the use and distribution of her cells.

  6. I agree. I just finished the book and Hopkins should offer the family descendents free medical service for their lives to make up for the way Henrietta and her family were treated and suffered for 60 years.

  7. How can Johns Hopkins not give the family their due and provide them with free medical care? What is the point of this article other than telling us what we already read in the book? If Johns Hopkins does not provide the care the Lacks family deserves they are adding to the injustice immeasurably.

  8. Suggesting that this family be the exception to the great American way is facile.

    If the Johns Hopkins owes free health care to this family, why not every family from every patient who might have donated some piece of themselves that may have contributed in some way to something beneficial? How would Hopkins and all the other hospitals afford to stay open?

    Perhaps the market driven system should not apply to ensuring citizens have adequate healthcare. Why should doctors and pharma companies get rich while most of the population cannot afford good health?

    • Henrietta Lacks’s children and descendants had their blood and tissue samples taken with no knowledge as to why this was being done. This was not done “for the greater good.” That expression covers a world of bad behavior. Deborah (daughter) thought she was being tested for cancer, and when she called to find out the results of the cancer test, no one knew what she was talking about.

      The case of Henrietta Lacks involves an extreme violation of privacy (“HeLa”); lack of any kind of consent, particularly when talking ‘over the heads’ of the participants. The idea that a college education would have helped in comprehension is erroneous. A science background would have helped, for instance, not a BA or MA in Creative Writing.

      Realistically, the family was lied to. Legally, when Henrietta’s cells were removed and place in the petri dish, they were no longer her cells, according to the California Supreme Court, which ruled on a similar case in about 1986 (John Moore and the “Mo” cells).

      No, donors like myself do not need to be compensated for the use of our cells. People like the descendants of Henrietta do need a modicum of respect shown to them because their cells were used also. Medical care is a small drop in the financial bucket for this family. We know who HeLa belonged to; you do not know who I am or which cells are mine. There is a universe dividing the two.

  9. Ethics/genetics

    What was the first word?

  10. I seldom leave a response, but i did some searching and wound
    up here Henrietta Lacks: her cells – and ethical issues – live on
    | Johns Hopkins Magazine. And I do have a few questions for you if you usually do not mind.
    Could it be just me or does it look like some of the comments appear like left by brain dead
    folks? 😛 And, if you are posting on other places, I’d like to keep up with anything fresh you have to post. Would you list of all of your social pages like your twitter feed, Facebook page or linkedin profile?

  11. My heart aches for Ms. Henrietta Lacks’ family on many levels. It is my hopes that John Hopkins and all those who have profited from Ms Lacks’ cell will compensate her family: at least that will ease the pain for the family of the unethical treatment of their mother. It is one thing to be an organ donor by choice, but to take a part of one’s body and give it immortality, while the body itself is dead is what horror movies are made of.

  12. I agree with so many others here who have stated that at the very Least JHU should be providing free health & dental care to Henrietta’s children, and I’ll add grandchildren. In addition to that some kind of compensation is in order. Adding to that, how do you put a dollar value on so many things in research that were ground-breaking firsts that have saved so many lives ?….None of them possible without Henrietta’s cells. I just don’t have any words for the injustice done to her family. A large part of that being repeated omission which is often considered as grave as Lying. For them not to know anything at all for over 20 years is unconscionable, and then still not told about All of the intent of taking samples from the family.
    God bless Skloot for starting the Henrietta Lacks Foundation that offers some relief for the family from the book’s royalties.

  13. Nursing Student

    I am sorry, but your article is not telling us anything that we don’t already know. The bottom line is that this man, did not get consent when taking these cells and using them for his research. Furthermore, patient care is not just about the patient, it is about the family as well. The fact that family did not know anything about the cells as soon as Grey realized the potential of these cells is not ethical in any form or fashion. I get it that there are some things a healthcare provider may not want to tell due to the potential of more harm being done than good. However, I just do not feel that this one of those cases. The family should have been notified from day one, and the idea of asking her family members to come in because they want to test them for ‘cancer’?? How do you justify something like that?? You cant!!

    I will end this by saying, If Henrietta was your mom, and this was your family how would you feel?

  14. read the book three times

    It’s called Democracy – Hypocrisy – Capitalism.

    To understand everything what was going on in 50s-80s, and the whole Henrietta’s story and all who was involved, needs to read Skloot’s book more than one time. I read it already 3 times. I did research on scientific studies of those days, detailed personal stories about Skloot’s characters (that are not in the book). When I read the book for the first time, I had only strong emotions without a single rational opinion that should be based on facts and research. Also, thanks to the HeLa I have hope for my treatment. I am very thankful to her for that!

    The illusion that people embrace themselves about pure democracy, privacy, and ethics get them in trouble; emotional trouble I mean. Where there is Capitalism – there will never be an intention that are for pure humanity sake. (Study economics) Especially these days. Sadly, people put money higher than anything else (I am not criticizing), because the society dictates that. This is how we live these days.

    People look at “privacy” and “ethics” as from (their own) individual perspectives. However, those “bad guys” who are making all those line cells happened, drugs, treatments etc. AND money are individuals too, who want their rights and privacy protected the way they want — democracy is very interesting tool. I am not justifying their actions, just trying to make a point of the democracy.

    Perhaps, it wouldn’t hurt much to give even at least a 5% to those, whose cells helped in scientific research (out of the $$ billion dollar profit); though, multiply all those numbers that have to be given away, will there be much left for the researches and spending. We do not know the industry. We cannot judge; at least I am not qualified to answer this question. As this is all private organizations, who do not have much government investments, meaning from citizens – they do the way they think it is right for them. (again, think from the other side perspectives). Perhaps there are other ways to appreciate patients.

    It would be nice if Hopkins would give the whole Lacks family a free medical treatment, as a “Big Thank You”. And I believe they would do so… However, Hopkins didn’t really profited from the HeLa – they gave away cells and have no legal rights to profit from the HeLa cells. That means, if they are going to give such present to the whole Lacks family, all those expenses have to come out from the rest of the Hopkins patients. Do you think every patient will agree with that? Do you think there wont be a single person who will claim the same right, because his/her cells were used in scientific way?

    It is very complex situation. We would think the solution is very simple. However, with the complexity of our country governing regime (not a critic), regulations, and law – it is not easy.

    We often hear: “It is just a business, nothing personal”, “Everyone survives as he/she can”. “Everybody wants to be rich.” (personally, I don’t. I want to have enough). These are practical things, not a myth.

    And again, this is just my opinion. I went through tragedies, that I thought would brake me for good. I lost loved ones because of the medical mistakes and justice wasn’t on my or my family’s side. I have learned to see things different and make rational choices. We are all making choices and live with them.

    I have a question to all who posted here. Did you donate to the Lacks Family Foundation? Because I would hear responses like: “I am barely getting by myself. Let’s those doctors and scientists pay – they owe the family.” etc.

    We all can judge, but to have a justified opinion is something different.

Trackbacks

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